There is a risk of death for young people with epilepsy, and discussion with parents of these risks is important but may not always happen. Sammy Ashby of charity SUDEP Action, shares information that is available to support conversations and ensure safety.
A new checklist tool is now available to health professionals to ensure they share vital information about epilepsy risks with young patients.
The Children’s SUDEP & Seizure Checklist has been developed by SUDEP Action in conjunction with Young Epilepsy and the Cornwall Partnership NHS Foundation Trust. SUDEP stands for Sudden Unexpected Death in Epilepsy.
Currently, more than 21 people with epilepsy die each week and many are otherwise young and in good health, apart from their epilepsy.
It’s a sad reality but many of the bereaved families who reach out to SUDEP Action in the aftermath of losing a loved one to an epilepsy-related cause, tell us they never knew someone could die from epilepsy. Many also tell us they feel angry and let-down because they were never told of these risks by their GPs and healthcare providers.
Checklist for discussion of risk
All people with epilepsy have the right to information about their condition, including the risks. Epilepsy is no different to any other condition in that respect – because understanding risk empowers people to take positive actions to live as safely as possible. Avoiding discussions because they might be difficult is just not good enough.
That’s why we’ve worked to develop the Children’s SUDEP & Seizure Safety Checklist and why we believe it’s a tool that all health professionals involved in the treatment of epilepsy should be using. Why? Because it will allow them to share vital information in a positive way that makes young patients – and their families – feel like equal partners in their care. It’s about building people’s confidence so they can take positive steps to live well with their epilepsy.
We created the adult version of the SUDEP & Seizure Checklist in 2014 and it’s now regularly used by more than 1,700 clinicians. However, for some time, we’ve been aware of the need for a dedicated paediatric version of this checklist to tailor support and two-way communication for children and young people.
This checklist will save lives because it leads to earlier identification of epilepsy-related risk factors in children and therefore better interventions and management. It makes communication between clinicians, patients and their families smoother, ensuring key messages are not lost in the hustle of bustle of busy time-limited appointments.
The children’s checklist – like our adult version – is free and designed for use in clinics and surgeries. It provides a clear baseline for comparing changing risk factors over time and has been developed using current research and clinical guidelines, drawing on inputs from senior, specialist healthcare professionals based across the UK.
Until a few years ago it was thought that SUDEP was rarer in children than adults, but this has now been proven wrong.
Being able to share vital risk information with young people with epilepsy and their families is so important so they can make the best choices for them. I believe this new Checklist will help health professionals feel more confident in having potentially life-saving conversations with their patients in a positive, personalised and evidence-based way. Knowledge really is power.
Sammy Ashby is CEO of SUDEP Action
Register for the Children’s SUDEP & Seizure Checklist here
SUDEP Action is the only UK charity supporting those whose loved ones have died suddenly from an epilepsy-related death. Their services include free bereavement support, counselling and help with understanding the inquest process. For more information go to www.sudep.org
